Information for patients, their families and helpers
Online support network
An egroup, the Refsum Disease Support Network, has been set up as a way for adult Refsum's disease patients to communicate and to help each other:
"We are people affected by adult Refsum Disease, sharing our experiences, coping strategies, dietary tips, etc. with Refsum patients, their families, caregivers, significant others and friends. The purpose of our group is to support, inform, advise and encourage one another as we face the many challenges of living with a rare metabolic disorder.
"Although the group communicates mainly in English, language should not be a barrier to joining. Members are welcome to post messages in their native tongue as many of us are multi-lingual. Access to translation programs is provided via the Link section in the navigation tool under the Translation Tools directory. Members are invited to regularly check the Files and Links sections for more information on the disorder and related topics."
Page last updated 26 June 2006